Literature DB >> 9832893

Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals.

G Evers-Kiebooms1, M Decruyenaere.   

Abstract

About a decade ago the introduction of predictive testing for Huntington's disease (HD) was an important milestone in medical history. The aim of the present paper concerning predictive DNA-testing for HD is fourfold. First of all it describes the professional challenge of elaborating an adequate test protocol and of permanently using a multidisciplinary approach to deal with predictive test requests. Secondly the paper is aimed at unraveling the factors that play a part in uptake and decision making regarding predictive testing. Hereby the Health Belief Model is used as a framework for understanding differences between tested and untested persons. Thirdly the impact of the test result on psychological well-being is reviewed. Finally this paper assesses the utilisation of prenatal diagnosis after predictive testing for HD and reflects on the psychological and ethical implications of different types of prenatal tests, including preimplantation genetic diagnosis.

Entities:  

Keywords:  Empirical Approach; Genetics and Reproduction

Mesh:

Year:  1998        PMID: 9832893     DOI: 10.1016/s0738-3991(98)00086-x

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  21 in total

1.  Psychological functioning before predictive testing for Huntington's disease: the role of the parental disease, risk perception, and subjective proximity of the disease.

Authors:  M Decruyenaere; G Evers-Kiebooms; A Boogaerts; J J Cassiman; T Cloostermans; K Demyttenaere; R Dom; J P Fryns
Journal:  J Med Genet       Date:  1999-12       Impact factor: 6.318

2.  The perceived advantages and disadvantages of presymptomatic testing for Machado-Joseph disease: development of a new self-response inventory.

Authors:  Luísa Rolim; José A Zagalo-Cardoso; Constança Paúl; Jorge Sequeiros; Manuela Fleming
Journal:  J Genet Couns       Date:  2006-09-27       Impact factor: 2.537

3.  Nationwide survey on predictive genetic testing for late-onset, incurable neurological diseases in Japan.

Authors:  Kunihiro Yoshida; Takahito Wada; Akihiro Sakurai; Keiko Wakui; Shu-Ichi Ikeda; Yoshimitsu Fukushima
Journal:  J Hum Genet       Date:  2007-07-05       Impact factor: 3.172

Review 4.  Information processing in the context of genetic risk: implications for genetic-risk communication.

Authors:  Holly Etchegary; Colin Perrier
Journal:  J Genet Couns       Date:  2007-05-01       Impact factor: 2.537

Review 5.  The psychological impact of predictive genetic testing for Huntington's disease: a systematic review of the literature.

Authors:  S Crozier; N Robertson; M Dale
Journal:  J Genet Couns       Date:  2014-09-20       Impact factor: 2.537

Review 6.  Predictors of genetic testing decisions: a systematic review and critique of the literature.

Authors:  Kate Sweeny; Arezou Ghane; Angela M Legg; Ho Phi Huynh; Sara E Andrews
Journal:  J Genet Couns       Date:  2014-04-11       Impact factor: 2.537

7.  Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies.

Authors:  J Scott Roberts; Jenny Ostergren
Journal:  Curr Genet Med Rep       Date:  2013-09

8.  The Confluence of Psychiatric Symptoms and Neurodegenerative Disease: Impact on Genetic Counseling.

Authors:  Jill S Goldman; Edward D Huey; Deborah Z Thorne
Journal:  J Genet Couns       Date:  2016-12-24       Impact factor: 2.537

9.  Ethics in prion disease.

Authors:  Kendra Bechtel; Michael D Geschwind
Journal:  Prog Neurobiol       Date:  2013-07-29       Impact factor: 11.685

10.  Discovering the family history of Huntington disease (HD).

Authors:  Holly Etchegary
Journal:  J Genet Couns       Date:  2006-04       Impact factor: 2.537

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